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Migraines And Going Gluten Free
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Hello everyone, I really need your help. I have been getting debilitating migraines for years. The left side of my face will go numb, I can't speak without slurring, and sometimes my face sags, and my left arm and hand go numb. I have been going to a neurologist who sent me to a sleep specialist. They said I had narcolepsy, based on no symptoms other than my brainwaves while sleeping. The neurologist suggested that I go gluten free and see what happens. I have been gluten free 6 weeks ago. 1 week in, I stopped having migraines and then went 23 days without one. That is unheard of in my world. Then about 30 days in I tried gluten again and got the worst migraine ever. The neurologist said I was allergic to gluten and not to eat it anymore. I have had a migraine every day since and I don't know how to make it stop. I haven't been eating gluten, but I am not sure about cross-contamination. I am not doing anything I didn't do the first 30 days. One of the weeks I have had a migraine I was on my period, but it has come and gone and still my migraine is here. I am so miserable. I was wondering if I should go get all new stuff for my kitchen. Or if I am doing something else with shampoo or makeup. I am just at a loss and I am hoping someone else has had the same issue. The first 30 days were a life changers and now I am not sure what happened. Thank you in advance.

 

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I don't know if this happens to everyone - but it happened to me. I went gluten-free for about a month just like you did. Then I did a gluten challenge for diagnostic purposes for 3 weeks. Now I am one week out and I am getting headaches pretty much every day since I stopped eating gluten this time around. I think it's normal withdrawal from gluten. Perhaps it is more difficult the second time around than the first... I hope you feel better soon!

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http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

I hope you feel better soon!  Check out the above link that will take you to a thread within this forum.  It contains tips about going gluten free and covers cross contamination.  

 

I never got migraines, but I know that each time I've been accidentally glutened -- my symptoms return stronger and last longer!  For some it can take three weeks to recover from a glutening!  

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Hello everyone, I really need your help. I have been getting debilitating migraines for years. The left side of my face will go numb, I can't speak without slurring, and sometimes my face sags, and my left arm and hand go numb. I have been going to a neurologist who sent me to a sleep specialist. They said I had narcolepsy, based on no symptoms other than my brainwaves while sleeping. The neurologist suggested that I go gluten free and see what happens. I have been gluten free 6 weeks ago. 1 week in, I stopped having migraines and then went 23 days without one. That is unheard of in my world. Then about 30 days in I tried gluten again and got the worst migraine ever. The neurologist said I was allergic to gluten and not to eat it anymore. I have had a migraine every day since and I don't know how to make it stop. I haven't been eating gluten, but I am not sure about cross-contamination. I am not doing anything I didn't do the first 30 days. One of the weeks I have had a migraine I was on my period, but it has come and gone and still my migraine is here. I am so miserable. I was wondering if I should go get all new stuff for my kitchen. Or if I am doing something else with shampoo or makeup. I am just at a loss and I am hoping someone else has had the same issue. The first 30 days were a life changers and now I am not sure what happened. Thank you in advance.

Hello

I  have  been a  migraine  sufferer most  of  my life... Ten  years ago  when I went  gluten-free  the  migraines  lessened  , now  I get  them  when the  weather  changes...always  bad, no lights, noise, lots  of pressure  (head exploding), shakiness, vomiting...they  can  last  for  an  hour  or  for  several days...I tried  the  migraine  meds  but  didn't  help  & I felt  like a  space  cadet...for  years  Excedrin was  my  help but  docs  yelled about  me  taking  it  too much  &  too often but  when  you have a migraine  you have  a migraine! So  a  doc  suggested  I  drink coffee when I  feel one  coming  on  or  just  drink coffee each  day. It took me  a  good  while to learn to drink  coffee .And  I will say no other caffeine would  help ie: coke, pepsi...a person told  me  warm coke  fixed  them  so I tried  warmed  coke , YUCK , vomiting  for  an  hour  after...After  I  went  through menopause  the  migraines  have gotten better  except  for the  darn  weather  changes....Now  I  try to  eat  protein, very hot  then very cold  on my  neck & head for 10-15 minutes  each, banana popsicles  until  my  throat  feels  frozen  & I'm  shivering cold....rest peace  & quiet...

 

now  to being  safe  & gluten-free.....

there is  a newbie  post on here to help...Any pot,pans, utensils, cutting  board, toaster, plastic  items  , Teflon that  are  scratched needs to be  replaced. If  you have  stainless  then they are okay unless  they  were  gorged  to  make  deep scratches...

if  you have  others  who  are not gluten-free in your  house  get  your  own jars  of  peanut butter, jelly, mustard  &  things  that others  will be dipping into  . Or  else  train them  to  use  a spoon  to  dip into the  jar  & never  put  the spoon near  wheat bread ...

You  can only  sick ill from  gluten  if   its  gets  to  your intestinal  tract so  per say shampoo  wouldn't  make  you sick unless  you  ate  some. lipstick is  one  I  would  watch tho  as  we  do  lick our  lips  & ingest  lipstick...

Some  super  sensitive  people do  react  to  things with gluten  on their  skin  but  it is  not  intestinal  woes  but maybe  hives, itchy  skin, rashes & such  ....

As a  founder  of  a support group I  suggest  to  start out  with  things that  are  naturally gluten-free  ie: plain meats, fish, veggies, fruits.  season your  own  .. Use  nothing  that  is  marinated, seasoned,  breaded, rubs, or  dusted unless  it  stated  gluten-free  on the  label..

Its  also good  to  stay  away  from process gluten-free  foods to give  yourself a  chance  to heal & feel better. Think  clean  eating, more healthier  anyway...

 

hth

blessings

 

mamaw

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Just wanted to mention that I've only had a few migraines in my life and used to get them once in awhile when I was highschool.  Then a few weeks after going gluten-free I started to get headaches in the morning that felt as if they wanted to turn into migraines, although they didn't.  I finally figured out that I was having a reaction to my multi-vitamin - I think maybe because it has iron it in.  I had been taking it with breakfast, which for me is a glass of whey protein.  While I was eating gluten, it never bothered me.  Now that I'm gluten-free I have to wait until lunch to take my multi-vitamin so that I'm taking it with a substantial amount of solid food.  I think I'm actually absorbing more of the multi-vitamin now, especially the iron, and I'm actually absorbing enough of it now that I have to take it with food.

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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